Fall 2016 Newsletter

November 17th, 2016

Please visit the links below for the latest news from The Glut1 Deficiency Foundation! Fall 2016 Newsletter

Help Some1 with Glut1

October 28th, 2016

The York family of Oktaha, Oklahoma is hosting their annual Help Some1 with Glut1 on Saturday, November 12th in honor of their daughter, Abby.  All proceeds benefit the Glut1 Deficiency Foundation and its mission of education, awareness, advocacy, and supporting researchers. Find out how you can register to be a virtual walker or make a donation by visiting their website. Thank you York Family and…

1st European Conference on Glut1 Deficiency

October 23rd, 2016

The Italian Glut1 Deficiency Foundation recently hosted the first European conference on Glut1 Deficiency.  They have put together some photos and shared presentation slides of the meeting.  You can find them at their website: 2016 European Conference – Milan

Summer 2016 Newsletter

August 5th, 2016

Please find the summer 2016 edition of our newsletter at the link below.  Inside you’ll find news of our most recent research grant awards, conference updates including registration links and hotel reservation information, along with other important updates and family news. Sincere thanks to Jimena Del Azar and Vivian Mathis for helping provide a Spanish translation of the newsletter. Summer 2016 newsletter

Love Some1 with Glut1 campaign video project

July 26th, 2016

Share your heart with us! AND be a part of the Love Some1 with Glut1 2017 Campaign Dear Glut1 Deficiency Families, The Glut1 Deficiency Foundation conducts an online fundraiser Love Some1 with Glut1 Fundraising Campaign* each year from Valentine’s Day, February 14th to Rare Disease Day, February 28th.  It is the only official fundraiser conducted by the G1D Foundation, and all proceeds help the Foundation in its mission of…

2016 Grant Award Recipients

July 24th, 2016

  Thanks to the generous support of friends and family of Glut1 Deficiency patients, the Glut1 Deficiency Foundation recently awarded over $150,000 in research grant awards.  We are deeply grateful to all who support the work of the Foundation and make these awards possible, and we are equally appreciative of the dedicated scientists who are interested in helping our community and improve the quality of…

New Jersey Family Gathering

June 4th, 2016

Tom and Maria Rebbecchi are hosting a Glut1 family gathering at their home in New Jersey on July 16th.  They are inviting all families from the surrounding areas to join them for a fun day of meeting and sharing.    Please see details below and RSVP by July 7th if you are able to attend!

Spring 2016 Newsletter

May 12th, 2016

  Our Spring Newsletter is ready and posted to our website at the link below.  You’ll find updates on the results of our Love Some1 with Glut1 campaign, our Research Grant Award program, 2017 conference planning for our Nashville gathering, and some great family updates. Spring Newsletter  

Gears for Gracie

April 17th, 2016

The Snyder family is hosting their second annual 215 Jeep Crew supports “Gears for Gracie” because they are Geared Towards a Cure for Glut1-ds! If anyone is in the Philly area, they would love to have you join them. Last year they raised $3500 at the event and hope to beat that total this year. Please contact Joanna with questions or for more information! June…

Miles for Millie

April 3rd, 2016

Come join us, the Meisner family, for an event to benefit research for Glut1 Deficiency! Our sweet Millie, and the amazing kids sharing this Glut1 journey, are our inspiration and we are riding toward finding a cure for Glut1. Penn Medicine’s Orphan Disease Center (ODC) is sponsoring the Million Dollar Bike Ride on May 7 to raise money for rare disease research. Our team is…